Lord – Page 16 – Jesus is for the Wounded

All You Need is Love

Published on April 1, 2014April 1, 2014 by Jesus is for the Wounded1 Comment

Sometimes you just need Jesus with skin on, ya know?

Tis quite humbling to find true love in the midst of the most wretched time of my life. Even the worst of the trauma of my childhood cannot compare to the wrecking ball-like experiences of violent, waking seizures every day. During the bewitching hour of night my beloved often lingers nearby, checking in periodically or lies next to me to warm my chilled, freaking out frame. Perhaps he has carried me to the bathroom moments earlier or fed me some water to drink in my listless state after an episode. And then comes the silliness that only a River Bear can muster in the midst of yet another crisis. Seriously! He finds a way to laugh in the midst of it all.

Sometimes you just need Jesus with skin on and I am exceedingly grateful love my Steve every day. Making his lunch bag for work or cooking dinner a few nights per week is my meager contribution of late. Sometimes I can do housework, grocery shop and laundry too; not so much lately. It doesn’t seem to matter to my husband though. He appreciates any of it and celebrates when I can get out and walk the dog or create a piece of jewelry instead of completing the chores. Peanut butter and jelly sandwiches seem to fill his belly just the same! What further amazes me is his compliments and words of encouragement when I am at my lowest. I have never known this much love from anyone before Steve!

To those Gentle Readers who are single: be the partner for which you seek and wait for the one who will love you above all else after the Lord. I found Steve after 47 years of living and after kissing a few frogs along the way! Oh well. Sometimes you can’t tell a prince from a frog until it’s too late! Yet when we trust the One who knows and numbers each hair on our pretty little heads, He will bring your night in shining aluminum*, or is that armor (?) at just the right time. The trials and adventures of life come alive when shared with your intended beloved.

I used to say that I could make a relationship out of anything. I was dumb and wrong. Settling for less only brings heartache. I now see too how the Lord empowers me to love Steve beyond my earthly capabilities and he must be doing the same for Steve as he loves me too. In doing so we are drawn even closer together. How does one prepare a lunch bag, clean up the kitchen at 4:00 a.m., and make it back to bed when sickly, nauseous, twitching in pre-tic episodes, etc.? (How does Steve work full time, serve and worship at church, attend to household tasks, and keep up with athletic endeavors after staying up late with me?) By calling on the Lord to add His increase, He brings blessings beyond the tasks at hand. As for me, on particularly bad days I don’t do much of anything. The look in my eyes is all I can give, to say how proud I am that my husband goes to work each day for us, or for me to muster up the strength to take a shower and wear the jeans he likes the best. It is enough. It is love.

Thank you Steve. Thank you Lord!

Steve and Julie looking out over Lover's Leap, Starved Rock State Park, Illinois — Steve and Julie looking out over Lover’s Leap, Starved Rock State Park, Illinois

******************

* The “night in shining aluminum” story stems from the theme of many romance novels: the dashing young man will eventually scoop the young maiden into his arms and carry her off into eternal bliss as the sun sets. I believe I had a similar experience the day of my move from the west suburbs of Chicago, Illinois 200 miles east to be with Steve in northeastern Indiana. We met on Yahoo Personals and had a fairy tale long distance relationship for longer than my Prince Charming desired. Each time we parted to make the long drive home he would tease me about running off to be with him in Indiana! The tell tale moment finally came on moving day in November of 2007. The movers had packed the 24-foot box truck with all of the earthly possessions from my beautiful condo near the Dupage River. We were standing in the parking lot about ready to go when he popped the question. Steve looked at me and said, “Julie I’m going to ask you one last time: will you come away with me to Indiana?” I jumped into his arms with a resounding “YES” and off into the beast of shiny aluminum we went! My prince had come for me at last . . . :J

Flowers for Algernon?

Published on March 22, 2014September 24, 2022 by Jesus is for the Wounded2 Comments

Another temporary setback in my health tonight ended by a couple of drops of tea tree oil masking the noxious scent of perfume. I don’t do perfume very well and am grateful for this suggestion of a friend familiar with essential oils. Thank you Lord for Cindy and tea tree oil!

Sigh. How am I supposed to be around people when the scent of any products they might wear with fragrances can trigger seizures? I feel like a prisoner in my own home. If I linger away from my cocoon then I am at risk. And if a guest visits our home not wearing perfume but carrying a coat or wearing clothing scented from another day, BINGO. I get sick.

I endured three major setbacks including last night and three other times this past week. Setbacks that is, from significant improvements that came from taking high CBD hemp oil. I was enjoying some sweet moments of near-normalcy! At least the overall episodes are shorter. I guess there is something else going on that is preventing the treatment from holding . . . .

Is it diet? How can it be when consuming a strict Candida, mold-free, and low oxalate diet? Could it be methylation or residual biotoxin illness issues? Perhaps and I’ll be pursuing these at a new clinic next week. Is neuro-Lyme the culprit after all and I need to get back into antibiotic therapy? The Rife machine made me worse. I’m not so sure about Lyme disease anymore as my genetic markers are more significant for mold illness than Lyme disease. Still: who knows?

In the 1966 novel Flowers for Algernon, Daniel Keyes portrays a mentally disabled man who gains intelligence after being selected for an experimental brain surgery. The surgery was shown to be successful in a laboratory rat whose intelligence increases 3x after the procedure. Charlie, the main character, undergoes the procedure himself as the story follows him from his menial janitorial position to falling in love with one of the teachers at the school in which he works. Charlie quits his job about the time that the rat begins to decline. The improvements did not last. Charlie buries his little friend in a cheese box in the backyard near the close of the story.

I worked on the set of the stage play of Flowers for Algernon at my high school. The sorrow of the scene pictured above when played out even by a wiry teenager was very emotional for all of us backstage. I will never forget it. For me it represented finding hope then moving forward in life with new skills and possibilities. My life was already very painful at age 15. The story touched my heart as we brought it to life for our peers and parents. My tears had no where to go as I stood in the dark backstage, waiting to bring out props for the next scene. When I got home the lockdown continued in the chaotic and unsafe environment of my childhood. My sorrow was locked away for many years. After much healing and decades of living, the Lord brought back this particular story to mind recently with the frustration of the illness that I am enduring: I came upon a reason to have hope from seizures only to have that hope dashed against the wall. Again. It feels like death.

Sadness fills my eyes. Of course I want to be well. Every time I grasp for air, stabilize my neck for fear of my head breaking off, emit some guttural utterance from the forceful involuntary movements of every appendage in rotation or unison from a seizure attack I become very aware that I could die from them. I stare blankly into space or hold my eyes closed to keep the room from moving. Keeping my eyes open brings dizziness and nausea; keeping my eyes closed brings increased fear and a lost sense of time. While still awake I sometimes can talk. The words are strained and speaking (like trying to move) runs the risk of exacerbating the attacks further. If the episode goes on too long then neurological collapse follows. I either have to lie motionless until function returns or my beloved Steve transfers me out of bed and carries me to the bathroom or bed. This more severe level of seizure occurs late at night when he needs to be getting ready for bed to be able to work the next morning. It’s my private hell. It’s his private hell. It’s the private hell on earth that is our burden to endure at this time. (See my non-epileptic seizure video for more information.)

To see a loved one losing the battle over illness, over injury is one of life’s greatest sorrows. Even for a Christian, experiencing it yourself will challenge everything you know about grace, endurance, meaning, and more. Flowers for Algernon is a fictional tale about a rat and a man who found answers but those answers did not last. The story touches a cord deep within me. Oh to taste the goodness of life and have it taken away! I have searched for goodness for a long time. One of the great opportunities of this life is to seize the sweetness that abounds, hold it lightly as it shines for a time, then let it go gracefully when we must either move on or the script of our lives writes it off the page. It must be the Lord’s plan but why? Such answers often never come. Moving on can be the reward for grieving well. Then there’s the fruit of living with loss that is ongoing: when the disappointment never really goes away. This is when you really know who you are. This is when you really know Whose you are. Paradoxically speaking, it can be the time when you are truly ALIVE.

I am a child of the King held in the shadow of His wings, His loving arms just like I quoted yesterday in Psalm 139. This night I bring forth an invitation for my Lord to:

²³Search me, God, and know my heart; test me and know my anxious thoughts. ²⁴See if there is any offensive way in me, and lead me in the way everlasting.

13 For you created my inmost being;
you knit me together in my mother’s womb.
¹⁴I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
¹⁵My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
¹⁶Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

My Lord sees me! Even so, this illness is one of my greatest mysteries from all of the events that have transpired in my life. In the past my Lord has graced me with seeing some good come from the evil, some divine plans that have emerged from the chaos through which the deepest desires of my heart have come true. I will hold onto His words that:

¹⁷How precious to me are your thoughts, God!
How vast is the sum of them!
¹⁸Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

At every turn, with each moment of sorrow I no longer ask:

⁷Where can I go from your Spirit?
Where can I flee from your presence?
⁸If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.

Indeed you have led me through it all. I can trust from Psalm 142 that:

³When my spirit grows faint within me,
it is you who watch over my way.

And as it reads in Psalm 100 we will all:

³Know that the Lord is God. It is he who made us, and we are his; we are his people, the sheep of his pasture.

We will:

⁴Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. ⁵For the Lord is good and his love endures forever; his faithfulness continues through all generations.

Rest will come for you, Gentle Reader and me too as we read in Psalm 121 that:

⁵The Lord watches over you—the Lord is your shade at your right hand; ⁶the sun will not harm you by day, nor the moon by night.

⁷The Lord will keep you from all harm—he will watch over your life; ⁸the Lord will watch over your coming and going both now and forevermore.

With that I bid you good night. I’ll be fine. Join me in trusting the Lord that you will be too, eh?

Long before sun up

Published on March 12, 2014March 12, 2014 by Jesus is for the WoundedLeave a comment

Recovering from a serious illness sure can make your daily schedule wacky! I know that I’m not alone when surfing Facebook and find a few lone rangers out there overnight in the various Lyme and Mold forums. Tis sweet. Often I get my best thinking, creating and writing done just before sun up. I used to say it was, “making lemonade out of lemons.” Yeah, o.k. I’m just glad to have some moments of clarity no matter when they come!

Here’s the latest fruits of my labors. Something good from Trinity Jewelry by Design:

DSCF9448 — Black leather wraps in style!

And in the meantime . . .

Published on February 13, 2014February 14, 2014 by Jesus is for the Wounded2 Comments

November 20, 2011 around noon. I was alone when my body began shaking uncontrollably. I was having difficulty thinking clearly and my speech was strained. All kinds of fearful, crazy thoughts ran through my mind including blaming myself for what was happening! It was the day after travelling about 16 hours to see family out of State and my husband had gotten up early after just a few hours of sleep to go to church and out to lunch with everyone. Having never fully recovered from viral hepatitis 1 1/2 months earlier and somehow surviving the extended car ride, there just wasn’t any strength left to get up in the morning and join them. Now I was immobilized and terrified of what was happening to me. Somehow I figured out that low blood sugar was worsening the symptoms. Finally I figured out that I needed to call Steve: he could bring home a take-out lunch for me from the restaurant and I would hang on until he got home. The only problems is that everyone was stuck on the other side of town anyways, with the drawbridge up that connected the roads between us! Flash forward about two hours and the episode was over. I fell into a fit full sleep and showered much later that day, pretty beat up from everything and quite embarrassed too. What had happened to me?

April 15, 2012 at 3:00 a.m. I awakened on my birthday with a nightmare and unusual shaking. The nightmare wouldn’t stop even though I was awake, whether or not my eyes are closed. I remained awake a long time, unable to fall back asleep. This incident occurred nine days after beginning to use a Rife machine, six days per week. (A Rife machine generates wavelengths of light and sound in program sequences designed to match the vibrational frequencies of various tissues and organisms in the body.) Treatment for Lyme disease had begun in January with a 5-week course of antibiotics then continued with Rife treatments late in March when I could not tolerate the antibiotics.

April 18, 2012 at 9:20 a.m. After running 15 minutes of various Rife programs, I was shivering uncontrollably. My hands and feet felt extremely cold. Fatigue overtook me and I napped almost two hours. I woke up feeling somewhat rested until crashing after additional treatments including the beginning of a series of magnesium injections.

April 19, 2012 around 5:20 p.m. I am suddenly awakened from a post-Rife treatment nap with the barking of our dog. I am unable to move for almost 30 minutes. My mind is dull yet rested until the second Rife treatment two hours later when I felt depleted once again. I learned that this can be a typical response to various treatments for Lyme disease and is often called a herxheimer reaction.

April 21, 2012 around 3:30 p.m. From my treatment journal I note, “moderate then moderately severe tics as I went to take a nap. Cast out with calling out the name of Jesus. Calmed. Re-started. Called out 2-3 more times and stopped.” A two and one-half hour nap followed shortly thereafter! Napping became my pattern after running Rife programs; my days were consumed with managing all the aspects of treatment.

The attacks of tic episodes continued every other day or so, mixed with nightmares most every day through the rest of the month of April. Beginning May 5th, the low grade and severe tic episodes ramped up to virtually every day. Most often they occurred when falling asleep after a Rife treatment or when trying to fall asleep at night. The first extended episode that appeared to be a full-blown waking seizure was on May 12th after a nap. It lasted 1 1/2 hours! I struggled to keep myself from hyperventilating or stop breathing altogether. Talking or voluntary movement were extremely difficult and made the attacks worse when attempted. I cried! My body temperature dropped and both thirst and hunger pangs increased dramatically. I was miserable, exhausted, and terrified all at the same time. While the nightmares would continue most days for another two weeks, they generally ended and recurred occasionally when taking a new medication or supplement.

Flash forward one year. We remediated our home for mold early in 2013 and both my medication and supplement regimes had changed many times. The seizure attack episodes increased to a couple of hours on a daily basis with some patterning in addition to after exposure to noxious stimuli. I stopped attending worship services at our church since it is a water-damaged building with mold. A recurrent urinary tract infection required treatment with a series of different antibiotics. The seizure attack episodes escalated into convulsions 1-2 hours after taking an antibiotic. My world continued crashing in on me as I began reacting to more and more foods, supplements, and types of noxious stimuli including loud music and bright lights. The tic and seizure attacks ramped up in the summer of 2013 to 3-4 times per day for a total of four hours per day and continued at this level for the next EIGHT MONTHS UNTIL JANUARY OF 2014.

In January of 2014 I was very beat up from the wretched seizure-like episodes. Remarkably they generally decreased to three hours-per-day in February after a series of extremely strict dietary regimes: a stricter, no-low-starch-veggie-Candida diet; Candida and mold-free diet; Candida, mold-free, and low sulfur diet; and finally where I am right now: Candida, mold-free, and low oxalate diet. I have religiously documented my treatment protocols and responses to them, tracked trends, consulted with neurologists & a pulmonologist, networked in numerous online forums and support groups, and researched every angle of this illness to no avail. Overall these days, this sickness is looking more like a biotoxin illness than Lyme Disease as evidenced by some genetic testing of late.

As of February 2014, some improvements have come including being better able to stay asleep and having stronger nails! My hair is thinner and so am I! However, I am largely deconditioned from intolerance to a full daily schedule of activities including exercise; headaches, global pain, ringing in my ears, and more have worsened. I haven’t worked in two years and am homebound much of the week. Concentrating on my hobby jewelry business is extremely difficult. Somehow I have still continued to blog and am grateful for a two-week improvement in my cognition long enough in October to publish my eBook: Hope Beyond Lyme: The First Year. I am grateful for all of the wonderful fellow sojourners I have met these past 2 1/2 years and have made some new friends too. When I see that a non-believer has read this blog, my spirit soars to think maybe the Lord is using my trials to reach others with hope for His glory! To see the Lord, Jesus Christ, as my sustaining grace and a source of hope for enduring the trials of this life makes this blog more than a journal and for that I am humbled, grateful.

And in the meantime . . . I am ready for the seizure-attacks to stop, of course! My neck is killing me from all of the thrashing about you know! I grieve the loss of time, the thousands of dollars, the stress, the isolation, and the strain on my beloved Steve. Will I become disabled or return to work? There is only One who knows the answers to that question and another big one, “why?” Gentle Reader, if you have read this blog before, you know what I am about to write here: it’s o.k. I’m going to trust the lover of my soul anyways, no matter what happens. I may try another treatment approach before I can see the doctors in a new clinic up in Michigan next month. High CBD hemp oil (legal in all 50 States) has been shown to work well for both children and adults with seizures and who knows, it just might help me too. However, I have been down this road of hoping for a cure before, only to have things worsen. Yeah, supreme bummer for sure. Sigh. It takes what it takes. Sometimes we wait and sometimes we go backwards. If the Lord leads me to some new information and gives me the ability to search it out . . . if my husband agrees . . . if the resources present themselves . . . and if there are no barriers after prayer and sleeping on it . . . sure, Ima gonna try it.

So when it works, Lord willing, you can join me in rejoicing for having hung in there with me along the twists and turns of this difficult journey. I hope I remember to lean on the Lord when times are good as well as when they are bad. Please help me keep my Jesus in front of me as He goes before me each day. Now let’s all get ready for some good news, k!